The Long Goodbye: the Alzheimers Society Campaign

https://youtu.be/m06RTgI3Oqk

There has been a lot of controversy about this campaign, and a record number of people with dementia making complaints about being portrayed as dead. My work is about living life to the full (http://www.forbrian.co) and Positive Spin (https://www.lfgss.com/conversations/270933/?offset=25#comment14521667) was conceived with @skydancer to deliver amazing opportunities for wellbeing in the moment, experiences of independence and leaving what our patron Peter Berry (who rides a penny farthing) "my dementia monster at home".

I would love to hear people's thoughts about this video, from people who have experienced dementia in their lives, but also those who have been fortunate not to.

Insider perspective: I worked for Alzheimer's Society for a couple of years as a digital fundraising manager. AMA.

Gosh so you woukd have been involved in the production of campaigns like this? What do you think of it? If you woukd prefer to keep it private, do message me directly. It was withdrawn and now re released. The AS staff on the ground that I were shocked but have been trained in the party line ...

As an insider EF11_FTW what's your view on the alzheimers society's approach to communicating about living with dementia?

If that video is anything to go by, they have seem to wish to communicate to the world that it's a long slow death. Which seems to contradict their dementia friends programme

To some extent yes, but digital marketing often has to take assets that have already been created for Digital TV/Print and just make them work for all other channels.

In (very) brief my take would be this: In the last decade, AS has made the transition from a medium size charity (~20m/year income) to a 'large' charity (>100m/year). When that happens, one of the results is that - now they're playing in the big league - they engage more expensive and more 'edgy' creative agencies, and look to produce ads that are likewise more risk-taking, because if one such campaign cuts through, it could translate into tens of millions of pounds of income. It's a high-risk, high reward thing.

So, while I have no knowledge of this particular campaign, it's very likely that the senior leadership will have done the calculus/risk assessment that will have weighed the potential for offending real humans affected by the issues against the uplift in income.

Sorry, @skydancer, your message came in while I was writing my earlier reply. I hope I've partly explained my take on things, but if you have further specific questions, I'll do my best to answer them.

When I was with AS, they had a CEO and leadership team that would only shortly afterwards be credibly accused of fostering a bullying culture, one main culprit of which was a fundraising director that I had also worked with at Macmillan Cancer Support, and who revelled in his 'divisive' reputation. They all left and quickly found posts at other charities. Income generation tends to trump ethics in these cases.

I am sure you are right. But what big league charities produce a campaign that has greatly disturbed the people they are supposed to support? The experience of every person with dementia is different, and the grief in families is expressed in very different ways. With a broad clinical experience I have not found this to be the norm, and how will someone worried about dementia be encouraged to see a doctor by portraying their future in this way?

I completely agree that the 'dying again and again' messaging won't chime with most people affected by Alzheimer's or their families/carers. But if it cuts through with potentail donors then...

The comms and fundraising functions and the information/support/coalface functions of a large charity will often be separated by sufficient work siloes/layers of bureaucracy that the former can put out a campaign with messaging that would dismay the latter without being subject to checks and balances.

There are, of course, documented policies and other lip-service to the idea of reflecting real experiences (AS had an explicit policy of putting the 'voice of the client' into every meeting and work output, as do many other charities I've worked for), but at the end of the day income generation will often come first.

My partner works for the charity and I’ve also worked in health charities in the past in a marketing function. Everything @E11_FTW chimes with my own experiences and I’m aware there were a lot of internal comms and briefings to staff including support/delivery teams ahead of the campaign and during some of the backlash. It’s definitely one of the more controversial ones but the Society does seem to be getting a lot of profile and cut through which then brings in the £££ but also awareness of the condition/opening up conversations and press coverage on research as well as living with or caring for someone affected. see the partnership with the FA for example.

I’m not a fan of AS. I requested an information pack and received a call from an extremely pushing advisor who wanted £X as a regular donation. When I said I wasn’t in a position to do that I she then started to haggle. When I said I’ll just take the information, she then asked me if I’d leave a gift in my will.

I totally understand this is a charity in a very competitive and saturated market. But the pushiness went way beyond what I would expect.

But if it cuts through with potentail donors then...

That I assume is the risk / reward calculation you referred to.

While it has clearly pissed of a large section of people living with dementia, and AS seem not to have really engaged in the discussion with these people, seems they consider raising money for research of a cure far outweighing the feelings of people and famlies.

Another area they seem weak in is preventative intervention promotion, and interventions that improve cognitive health for people with dementia.

If they raised similar sums of money for these things that improve people's lives now they'd be doing do much more good

This is a bit of a tangent, @Light_EDDed, but your experience will be a lot to do with the misguided culture of performance management. Many people working for charities are no less ambitious than their counterparts in the corporate sector. Their annual performance reviews will usually hinge on a few metrics/benchmarks set by a manager who has scant understanding of the bigger picture.

The person that spoke to you will have a manager who has fought a battle internally to extend their hard sell tactics beyond existing donors to everyone in the customer records management (CRM) system, including clients, people caring for clients etc etc. Again, the cost/benefit analysis will have been done on increasing income versus alienating existing supporters, and it will have been a mathematical/financial calculation, not an ethical one.

Another area they seem weak in is preventative intervention promotion, and interventions that improve cognitive health for people with dementia.

To be fair to them, in my experience, there was actually a lot of resources that went in to this. From my specific perspective in digital marketing, a good proportion of our paid social advertising was not directed at income generation but at this sort of promotion/information dissemination (though of course, there's also a halo effect there, hard to quantify but of at least some brand recognition/marketing value)

Another area they seem weak in is preventative intervention promotion, and interventions that improve cognitive health for people with dementia.

I am looking for info about this very subject. It's like I don't have the tools to even begin to talk to a parent about getting some help, who is a prime candidate for early intervention (some concerning events recently that, as a carer for another person who is seriously ill, could be disastrous if they worsen) ... my other birth parent is way beyong this stage with dementia now.

What are the thoughts of those who care for people with A&D?
How populat was this sentiment "my mum ddn't die once? it was a serious of slow deaths of the multiple bits of mum" seems like a thing someone might say and it might get amplified in discussion groups and then fed into a campaign to help raise funds.

It certainly seems like in a family I am close to, there's some relevance to this idea. The individual was extremely supportive and fairly wise. They seem rudderless now he is unable to recognise them, and there do seem to be kinds of grieving in the family already happening even though they are alive.

It would be worth comparing the amount the Alzheimer's Society spend on funding research and fundraising, with the amount they spend on interventions to improve people's lives now, and practically promoting a dementia.
inclusive society

Their mission statement is:
"To improve the lives of people affected by dementia."

https://www.alzheimers.org.uk/research/our-research/research-projects/current-projects

What is the question here?
I'm confused.

@Chalfie did you watch the video campaign? The ethical issue of conveying people with dementia as dying again and again and again is the question. It was released without the rubber stamp of their ambassadors with dementia.

Relevance I do not deny, an ethical way for a charity to behave quite another.

I am sorry to hear this. What support do you and your family have?

I think this campaign represents a change in focus, and raises money for a lot people in offices apparently employed to harass people looking for information to donate to the charity a lot of people with dementia are now refusing to have anything to do with

Do dm me and i can perhaps help?

I hope that is not the general strategy. Do look at http://Www.forbrian.co resources, and/or DM me to discuss what would help